Inflammatory bowel disease (IBD) is often referred to as an ‘invisible’ condition; it isn’t widely understood by the general public and the pain and discomfort felt by those afflicted is something they feel internally, meaning it often goes unnoticed by others. Misconceptions and myths are widespread, leading to many ‘ostomates’ feeling unfairly misrepresented, or often just plain under-represented.
But as with any illness or social issue, education and awareness are the first steps to changing people’s perceptions. The more people understand about these conditions, the less likely they are to make misguided assumptions and social blunders (I’m sure we’ve all heard the rumour that ‘colostomy bags make you smell bad’ at some point). These are the kinds of misconceptions that can make ostomates feel reluctant to open up about their condition. Having a stoma can also be a blow for their self-esteem – not everyone wears a colostomy bag, so naturally many feel self-conscious about how it might look underneath their clothing and what other people might think should they notice it.
But you can help make the topic more digestible (no pun intended) in social situations; greater awareness about how people live with these conditions ensures others see the importance of getting behind research and fundraising initiatives. By demystifying these conditions, we can also help other people with stomas realise their condition isn’t what defines them as a person.
So how can ostomates go about living out and living proud?
Take a look at Bethany Townsend, a makeup artist from the UK whose bikini holiday snap recently went viral. Bethany has two colostomy bags, but when it came time to strip down to a bikini and lie about on the beach, she decided she wasn’t going to let them stop her from enjoying herself
Bethany’s holiday bikini selfie – complete with colostomy bags in full view – was posted in the Crohn’s and Colitis UK Facebook page. From there the photo exploded, receiving over 12 million views, triggering a widespread show of support and prompting healthy discussion about living with Crohn’s disease.
Speaking out, Bethany said: “The photo has been seen by millions of people … I’m just so glad that it’s brought about more awareness of Crohn’s disease, and it’s made me feel so much more confident.”
Following the outpouring of support and positivity, Bethany has said she’s ready to start pursuing modeling work once more – a dream she’d thought was impossible because of her stoma.
Whilst she never expected one photo to have such a huge impact, Bethany’s brave move has helped shift the public’s perception of Crohn’s in a profound way. By pushing this ‘invisible’ condition out into the open, she’s not only helped raise awareness, but also proven that the general public may be almost ready to accept visible colostomy bags as a fact of everyday life
Bethany isn’t the only one inspiring others to be out and proud. Fitness model Blake Beckford has made it his mission to put the spotlight on his own condition and prove that illness and surgery aren’t what defines him, nor do they hold him back from achieving his dreams.
Ten years ago Blake found his bodybuilding sessions were getting harder to recover from. He soon discovered that he had ulcerative colitis and would need to undergo a sub-total colectomy laparoscopically and be fitted with an ileostomy bag.
At first Blake struggled to accept his new apparatus and he felt uncomfortable about ‘coming out’ as an ostomate when discussing his condition with others. “It took a while to build my confidence again [post-op], to talk to people openly about having a stoma, to show anyone what I had.” Blake said.
But today, Blake is anything but reserved when it comes to showing his colostomy bag to the world. He has appeared in numerous photo shoots for websites and magazines, including a recent piece for MensFitness.com, where he poses shirtless with his stoma proudly on display.
Blake says the response from the shoot has been overwhelming: “Overnight I saw my feed and inbox go crazy with messages about my story. I can’t believe I have been featured in so many publications … I am so glad that ulcerative colitis, bowel disease and ostomies are now on people’s radars!”
Blake continues to post fitness and modeling photos on his Instagram feed, often tagging his pictures with #ostomy, a popular hashtag with the IBD community. Blake is just one of many high profile Instagrammers who are collectively de-stigmatising life with a stoma, making IBD a more visible condition and redefining beauty, one hashtag at a time.
So be like Bethany and Blake: be proud and don’t hide your illness from the world. Your IBD and stoma don’t define you as an individual, nor do they stop you from being beautiful, desirable or just plain Instagrammable.
Date: 22/09/2014 IRIS number AU-REM0328